Table 1 Theme 1. Information for clinicians

About AMHS

Which service: the majority of clinicians had limited or no information about where to transfer young people to. When transition pathways, including names and contacts, were available, it made supporting transition easier.

“There’s supposed to be a kind of transition path that we could give to young people...we haven’t managed to get that yet and we kind of feel that we can’t move forward with it.” (Child Psychiatrist 13)

“We now have a psychiatrist who… specialises in adult ADHD, so we now refer to her. So that makes life a lot easier and means that it’s much more straightforward.” (Child Psychiatrist 01)

Referral criteria: Gathering and preparing accurate referral information was often complex, due to unclear AMHS acceptance criteria, and variation in service availability.

“I have no idea what their criteria are or whether they have changed...I don’t know the rationale behind that.” (Paediatrician 02)

“If they have got autism and ADHD and they aren’t on medication it can get really messy... Because there’s no pathway.” (Paediatrician 11)

Transition pathways: Clinicians were often not familiar with national guidelines on transition; or, if they were, described them as not being specific enough. Local protocols (where available) provided more specific and helpful information, however most clinicians were not aware of an agreed local transition pathway for ADHD, and therefore struggled to know how to facilitate transitions.

“I generally find them [NICE guidelines] useful. I can’t really recall whether they have anything particularly to say about the transition.” (Paediatrician 02)

“When I first started we didn’t have that and it was a bit more, you know, kind of phoning and looking for people and saying, ‘Are they this team or that?’ So the protocol has massively improved our transition.” (Child Psychiatrist 13)

Transition outcomes: Information about what happened to patients after transition was not routinely collected, and frequently not available to clinicians in children’s services. Some clinicians did not consider this kind of feedback to be important for transitional care, while the lack of feedback made others uneasy.

“I would assume many [drop out at transition] but I don't have any knowledge of any. We don't have any effective data monitoring system to know what happens…I will often give them that extra follow-up to make sure that they've come to rest safely. (Paediatrician 18)”

“I know from the adult services that some of our people we do refer just don’t attend.” (Child Psychiatrist 01)

About the young person and their ADHD

Young person: background information about the patient was seen as important to inform transitional care. This was gathered via various methods, including specialist nurses, home visits, conversations with parents, and contacting schools. An automatic reminder (via clinic IT systems) of when patients were approaching transition age, was suggested as a tool to help them to start thinking about transition. One clinician said that when they had only limited background knowledge, this led to poor quality provision of transfer information to AMHS.

“…keep some sort of intermittent dialogue perhaps through a telephone clinic with the parent just to check all is well, and if all is well then we would discharge them, but if they were still concerned we would tend to get updated information from school in the form of questionnaires …if they look awful then make contact with the parent again and then invite the child to have another chat about life, and if it looks good then we would discharge at that point.” (Paediatrician 16)

“We could really do with something that flags up a reminder to clinicians to start thinking at 16 about transition or earlier if need be and we don’t have that… Our systems are very primitive.” (Child Psychiatrist 03)

“Sometimes I’ve only seen them once and then I’m discussing transfer and I’m thinking I hardly know… I don’t have a lot to add to any sort of transfer information. …so I think that’s very frustrating and probably feels rather poor.” (Child Psychiatrist 07)

ADHD as a long-term condition: understanding and communicating the possible health and social care needs of a young person living with ADHD as a long-term condition was seen as an important, yet challenging, part of supporting transition. Clinicians wanted to be confident in their own knowledge, especially when communicating with patients and their parent/carers. There was variation in how clinicians conceptualised and explained possible health and social needs. Some were vague, some expressed different perspectives on how likely it was that a young person would ‘grow out of’ ADHD, and others provided detailed and nuanced information about what to expect.

“…advising things like driving and other careers and careers that they are excluded from if they are on medication. Sometimes we probably don’t have all the up-to-date information, or have to go away and research it ourselves to make sure that we are not giving the wrong advice.” (Paediatrician 19)

“…there is also a sense that as young people grow older, that they need it less because they are able to self-manage and understand their strengths and needs...” (Paediatrician 02)

“I’d say a majority still need it. Some do seem to outgrow their ADHD and that’s great, and I have had that happen, but I’d say a majority still need ongoing management with medication into adulthood.” (Paediatrician 09)

“…with ADHD, normally the hyperactivity has settled down by then, the impulsivity is there to a certain extent, it's the disorganisation that's a big problem and the emotional dysregulation…” (Paediatrician 05)

“…there are so many different issues. I suppose what I'm trying to say is that for something like ADHD where the diagnosis has a whole lot of subjective socially bits coming into it … I think that I can give an experienced medical take [to the patient] on … something where there isn't a right or a wrong answer. We can have this conversation.” (Paediatrician 14)

Social context of ADHD: an understanding of the social context of ADHD informed the way some clinicians guided their patients at transition. Respondents also mentioned that some clinicians (and members of the public) understood very little about ADHD, or held outdated views.

“And certainly we're still in a sort of stage with medical practitioners who query the validity of the approach. So GPs who won't prescribe, we're still in that sort of position locally.” (Paediatrician 18)

“One of the Adult Mental Health consultants is very experienced and very good, but obviously that’s one out of probably ten. The others vary from no experience to moderate experience with one or two still on the ‘ADHD doesn’t exist within the adult population’ theory.” (Paediatrician 11)

As exchanged between services

Information exchange: effective information sharing between child services and AMHS was seen as essential to support continuity of care: to inform AMHS about a new referral and child services about which referrals would be accepted. Information sharing practices varied from non-existent, to well established and effective. Sharing information with other agencies was rare, but could help to inform good transitional care.

“…we have a transition panel...that meet every month, Adult and CAMHS representatives attend from all the teams and you bring [details of] anybody you want to transition.” (Child Psychiatrist 13)

“For me it feels like they’re out there, you write to them but you don’t have any real liaison with them.” (Paediatrician 12)

“…very joined up with work with CAMHS, with paediatricians, hopefully schools and education as well, primary care. So I think we do try to do things as the best we can but everybody has too much to do and not enough time.” (Paediatrician 14)